The rare disease community has found strength in small numbers by banding together to share their stories. On this rare disease day, we would like to take a moment to recognize and celebrate the patient advocates and organizations that keep the focus on these underserved communities. Hi, I’m Tom Rhoads, CEO of Spencer Health Solutions. I’m proud to announce that today’s podcast will be the first in a series of conversations with leaders in the rare disease community. Our host, Janet Kennedy, welcomes Eden Lord to the People Always, Patients Sometimes podcast. Eden is the founder of the Dash Alliance and 24 Hours of Rare: a Global Celebration of Rare Disease. I hope you enjoy their conversation as much as I did.
Janet Kennedy: (00:49)
As we celebrate Rare Disease Day, I have the honor of bringing somebody to the podcast that, in my mind, overwhelms me with her initiatives and dedication to helping create community and conversation in the rare disease community. Eden Lord is the founder of multiple rare disease initiatives, including the Dash Alliance, the Rare Fare, 24 Hours of Rare, and Rare 72! So much happening to make it easier for folks who are in the rare disease community to come together for conversation. So on this special day, Eden, welcome to People Always, Patient Sometimes.
Eden Lord: (01:34)
Thank you so much for having me.
Janet Kennedy: (01:36)
You know, I actually had a chance to meet Eden a few years ago when I was invited – and I’m very proud to say – to sit on a panel during one of her virtual events. And it was a real eye opener. And, you know, we talk about imposter syndrome; I’m very fortunate in that I am a generally very healthy person. And when you are surrounded by people who are feeling the struggle of their health, every second they breathe, it sure does put things in perspective. And I was honored to be part of that program, but also humbled, by what a challenge life can be in living with a rare disease.
Eden Lord: (02:18)
It definitely is, but there are so many blessings that come with the path that you walk in the disease community and so many people – like yourself – that you get to meet who really have an understanding, or want to have a better understanding, of what it’s like to be a patient or raising a patient and what that path looks like and how people can help. It’s the attitude that we look for when we’re building our communities. And it’s definitely a hard road, but it is definitely a blessed road as well.
Janet Kennedy: (02:46)
Tell me a little bit about your background and how you became such an advocate for rare disease.
Eden Lord: (02:54)
Well, I, myself am a third generation rare disease patient. So it started with my grandfather, passed my dad, myself, and now we are raising four kiddos who all have a chromosome microdeletion, and it has manifested in multiple rare disease diagnoses for two out of our four kids, likely going to be three out of our four kids. So been hoeing this row for a while now.
Janet Kennedy: (03:18)
So from a rare disease perspective, I think the first challenge might be even figuring out that you have a rare disease?
Eden Lord: (03:26)
Definitely has been a struggle to walk that path towards diagnosis. And, you know, everyone’s story is different. For us, the story that stands out is our daughter who was not caught on newborn screening panels with her condition. And it was four months before we reached a diagnosis and it was a significant medical crisis that precipitated her diagnosis. So that’s definitely something that we’re cognizant of is the path that it takes. I think, on average, it’s seven years before you actually have that diagnosis in hand. And that’s if you’re one of the lucky ones; a lot of the times you won’t have an answer and you will go undiagnosed. And then you’re at a point where you’re just treating symptoms.
Janet Kennedy: (04:02)
Now to be qualified – and I’m doing air quotes here – as a rare disease patient, that means you’re one in what? Is it one in a million, one in 10 million? How do you qualify as a rare disease patient?
Eden Lord: (04:16)
Well, it’s gonna depend on a couple of things. One, it’s going to depend on what country you live in and what the prevalence is. And that changes frequently, because again, we don’t have everybody diagnosed that needs to be diagnosed. But here in the US, we would say it’s one in every 10 or about 10%. So if you put population somewhere around 300 million, we’re looking at 30 million Americans who are living with a diagnosis right now.
Janet Kennedy: (04:41)
Well, that’s actually quite a significant number.
Eden Lord: (04:44)
It’s not small. Factor in who’s still waiting for a diagnosis; you know, I suspect that number climbs significantly, and those are the people that we really want to also reach as a community and support, even though they don’t have a name to put with what’s going on in their lives.
Janet Kennedy: (05:02)
Now I have to say that I think the rare disease community is very fortunate in that you and your husband have a unique set of skills that have enabled you to say, well, not only are we gonna manage and deal with our family’s health issues, but we’re gonna do something to help other people. So tell me a little bit about how what you’re going through as a family ended up actually becoming the profession that you’ve committed to.
Eden Lord: (05:28)
Well, for us, it was kind of a frustration post-diagnosis for our daughter because we literally left the hospital and didn’t even have a sheet of paper with her diagnosis written on it. In this instance, she suffers from something called panhypopituitarism, and the only way I could remember what that diagnosis was, was Peter Pan, and thinking, I need to go home and research the heck out of this and figure out what’s what, because this was prior to smartphones and I didn’t have a laptop with me, so I was kind of on my own as far as research because the hospital didn’t provide that information. So for us, it’s really been an opportunity and a challenge to take our backgrounds in tech and education and try to build resources and tools that make things like, you know, diagnosis support, or different medical devices, medical treatments, more accessible to people and give them a place where they feel like they’re connected and engaged, even if they can’t travel to a conference. Even if they’re struggling to figure out where to start, we just wanna try to be that touchstone and point people towards the best resources available for the diagnosis and the situation that they’re living in.
Janet Kennedy: (06:37)
And what does that mean from the standpoint, if I were to go to the web, how would I find that information? How would I interact with you and your husband, Jeff?
Eden Lord: (06:45)
So we have a couple of different channels right now. We have the Dash Alliance, which is kind of our main umbrella organization. And under that, we work with several different organizations to help them become more patient-centric, to amplify the patient voice. We kind of worked across the spectrum with different stakeholders in the rare disease community there. It absolutely also means that patients and caregivers in other industries, stakeholders, representatives have access to our virtual events, which for us is a goal to try to bring as many people together in the same room and kind of do away with the hindrances of travel, the cost, the, just physical challenges of managing oxygen or a wheelchair or whatever that may be, and give people a space to gather that is safe, where they know that their voices are being heard, and that they can network with other experts in the field or other patients who are just living the same or a similar story that they are are.
Janet Kennedy: (07:39)
You know, it’s interesting you mentioned the travel; COVID aside, it is essential that patients participate in national conferences and be face to face with the pharmaceutical medical communities. However, even before COVID, that was not an easy trick. Aside from the financial impact, it’s not easy for a lot of folks who need to be seen and heard to travel, get on a plane, go to these places, and actively participate. So it doesn’t matter that COVID showed up; you really needed to have a virtual event in order to support these patients.
Eden Lord: (08:18)
Absolutely. And that’s kind of why we launched this in the first place with the virtual platform and virtual events is because I was doing quite a bit of travel and I was attending conferences. And it was fantastic because you build really solid, good relationships with people at the events. And then you see them a few months later, but the problem was you saw the same faces in every room, no matter what side of the country you were on. It’s very frustrating when you go in and you say, okay, this person would benefit, this person in my network would benefit, but I know they couldn’t be here because Delta’s broken their wheelchair twice, or this has happened, or this has occurred with their oxygen, or they just can’t travel because it’s an expense, or who’s going to watch their kids if they come to advocate for their loved ones in DC. There’s so many barriers that should not necessarily be there, and the virtual event platform was our way of telling everyone you’re welcome here. So our first year, our theme was “welcome to the table, we saved you a seat.” Because there is a place for you, and there is a place for your voice, and we will do our very best to amplify it and connect you with the people who need to hear it the most.
Janet Kennedy: (09:26)
So what’s the virtual event that’s tied around Rare Disease Day?
Eden Lord: (09:31)
So that’s something that we started last year that was so much fun. We had an absolute blast. What we do is for 24 hours solid, we skip around the globe and we get updates from people who are actually in the field doing the work. So nonprofit organizations, patient organizations, industry – everyone hops on board. They give us an update, and it hits noon at the local time, depending on which time zone we’re in. So if we’re in California, it’ll be lunchtime. And that’s the hour that that will pop up and air. And it’s really fun to just get different updates and to kind of celebrate the advances that people are making across the globe. And it just shows us that we’re all connected and we’re all unified in our mission, which is to improve the lives of our disease patients and families.
Janet Kennedy: (10:13)
Okay. That sounds really cool. Where does the day start then?
Eden Lord: (10:18)
We are starting in the UK, so it will be 12 o’clock their time, 7:00 AM Eastern. And we’ve got a fantastic panel from Rare Revolution Magazine, and they’re kicking everything off, talking about turning the tide on rare disease, and then it just skips across the globe from there. But it’s pretty fun. Lots of caffeine is consumed during that 24 hours, but it’s a blast.
Janet Kennedy: (10:38)
Okay. So I’m trying to figure out how you can manage that by yourselves; you must be exhausted. So where does it end if it starts in Great Britain, it ends in…?
Eden Lord: (10:48)
We are actually ending in Paris this year. We have a speaker – we’re kind of jumping a little bit – we have a speaker who is currently hospitalized with COVID and has asked for that time slot and thinks that he will be up and raring to go. And we said, “You know what? We will do what we need to do. You tell us where you wanna be planted on the schedule and that’s where we will put you.” So he is a very distinguished physician. We’re very, very lucky to have him and glad that he’s recovering.
Janet Kennedy: (11:13)
Is there a chance for folks to engage and interact during this? Or is it just a series of speakers?
Eden Lord: (11:18)
No, there is definitely always interaction in our events. That’s where the best stuff comes from, is from the interaction and, you know, the opportunity to connect with other people. We actually, this year, made the decision to incorporate working groups into our schedule. So by continent, with the exception of the very cold ones, we will be incorporating working groups where anyone is welcome to attend, discuss what they’re currently working on, what their current challenges are on their continent, and how we can support those challenges and needs.
Janet Kennedy: (11:48)
Oh, that’s amazing. You must have a very busy weekend getting ready for Monday. Whew!
Eden Lord: (11:52)
We do. But we’re excited. I mean, this is, this is what we all live for. This is like our superbowl, right? You know, showcase and highlight and raise awareness.
Janet Kennedy: (12:00)
That’s amazing. Okay. Tell everybody what the website is.
Eden Lord: (12:03)
The website for this is www.24hoursofrare.com.
Janet Kennedy: (12:08)
Okay. And that is 24hoursofrare.com. Oh, no spelling, that was, that was a bad idea. Okay! But here’s the thing; if you happen to be listening after the 28th of February or the 1st of March, be aware that this content is still going to be available to you. So where can they find this content: on the same web link?
Eden Lord: (12:34)
Yes. Same web link, which will take you out to our YouTube channel, which is where we house all of our previous sessions and just really great content, really great speakers. We’re so fortunate that we’ve had the participants we’ve had over the years.
Janet Kennedy: (12:47)
Tell me a little bit about running a virtual event for this community. We obviously need to get more voices at the table. Are you getting, not just patients, but are you getting the people that need to be hearing from patients to attend?
Eden Lord: (13:03)
I think we really are. We are definitely seeing a shift, not just with the events that we produce, but the events that we’re hosting for other rare disease nonprofits, and organizations. They’re really using this as kind of the platform to bring everybody together, regardless of where we go from here with physical, in-person events. So we actually have, I believe two hybrid conferences on the books for this spring; might be three, I’ll have to check. But people know that “virtual’s not going away.” It’s imperative that we continue to bring content and amplify the voices of those at home. So when you’re able to do that in a hybrid situation, say, “Okay, I’m gonna have my people on the ground. I’m gonna have pharma on the ground.” But one of the things that we’re now able to do with a hybrid model is hand a tablet to that person in the booth and say, “Here, you can still connect with people who are attending from their living room.” You can still have access to that booth rep for that pharma company or that medical device company. It is such a huge game changer. It really changes the landscape and how things look going forward. So I would be very surprised if people do not continue to implement the hybrid models going forward, just because of the need to continue the conversation that we’ve already started during COVID.
Janet Kennedy: (14:21)
You know, I am curious since you are very savvy about how to connect with folks online, about your experience dealing with a grandfather and a father, and now yourself and now having a child; so four generations. What’s the difference in how they managed – meaning your father and grandfather – how they managed information gathering and connecting and learning about their situation, versus say your daughter’s generation, who you could consider a digital native. From the standpoint of empowerment, engagement, getting involved in their own care, what do you see generationally as the differences?
Eden Lord: (15:07)
Such differences, Janet. And you make just excellent points about being digital native and what that means now. So, you know, when my grandfather was first diagnosed with multiple different things – multiple myeloma, Alzheimer’s – that in itself was a struggle; dealing with an Alzheimer’s diagnosis, in addition to cancer, and eventually pancreatic cancer. My grandpa was an attorney and he was a highlighter. So if you wanted to do you research, my grandpa would highlight things. He would underline things in books. So it was all medical books, and what could he read about his condition when he was able to do so. And my uncle was the same way. You know, my mother’s the same way. We were all raised to be highlighters and underline the material that’s important. So we would go in as caregivers and really oversee setting up his medication for the week. And it was very much, we’re going to take care of you, kind of an attitude; patriarch of the family, we’re here, whatever you need, clean the house, you know, keep up on your medical appointments with you, things like that.
Eden Lord: (16:06)
It was we’re here. We’re rallying for you. With my father – my dad was highly educated, very, very intelligent, but did not really want to know all the specifics. He had been through so much medical minutia and things that, you know, no one typically goes through as a healthy person, starting from when he was very, very small with accidents – he spent a lot of time in the hospital as a child – so he just didn’t want to know. So I kind of took it very seriously as my responsibility to know everything. He ended up with a five way bypass at one point. He ended up with a diagnosis that I had to ask for the blood test for. They diagnosed him with amyloidosis – which I always butcher that word – and I had to ask for the multiple myeloma test.
Eden Lord: (16:46)
So that was really taking the research skills that I knew from taking care of my grandfather and seeing kind of that example given to me, and going out and doing the same for my dad, because he didn’t wanna know the details of what was going on. He was showing up for procedures, but he just didn’t wanna know the background. And then with Cambria it’s been very much, “How do we keep her away from the stuff we don’t want her to see on the internet?” if she wants to go out and do that research, because for her, she wants to know everything there is to know. She wants to be informed. She wants to know what the rest of her life is going to look like, and she wants to know where the tools and resources are to improve her life right now. So it’s just been a huge spectrum kind of on down the line of how we approach and how we take care of things and what we entrust to people. And, you know, it’s generational in part too.
Janet Kennedy: (17:35)
So are you finding that basically anybody after the baby boom, is more empowered as a patient, more engaged as a patient, or are we still dealing with there’s different personalities? There are folks that jump all in and say, “I’m gonna be really a part of my diagnosis and get a handle on this.” And there are folks who just still, “I’ll do what the doctor tells me.”
Eden Lord: (17:57)
I think there’s always gonna be the personality of, “Hey, you know, I might not speak up just because I’m an introvert and I’m used to just accepting status quo, cause that makes me comfortable.” And there’s nothing wrong with that. But definitely post baby boomer generation, there is not the hesitancy to question a physician. And back in the day it was ‘the neurologist says to do this, the oncologist says to do this, so this is what we’re gonna do.’ And there was no brooking an argument, there was nothing. It was just, that’s the way things were. And now very much, we go in kind of armed with information and say, “Are you sure that you feel confident in that diagnosis? And have you seen this journal article?” And you kind of pull out your pad of paper with notes or you pull out your phone with notes and the doctor looks at you and kind of rolls their eyes.
Eden Lord: (18:42)
And you know what they’re thinking, “Oh, you’re one of those.” But that’s really the key in rare disease, is you have to press, you have to know that you’re doing the best thing for yourself as a patient or your loved one as a patient. And there’s all this information out there. So now it’s a question of health literacy and how do we educate people on the best medical information that is out there? So while they’re empowered and while they’re taking action and they’re taking control of their diagnosis, that’s fantastic. But how do we teach people what information is really medically sound and the stuff that you should be relying on?
Janet Kennedy: (19:16)
So I was gonna ask you a question about that. We know that COVID has proved to be very challenging because of misinformation, but do you find that in other rare disease situations?
Eden Lord: (19:28)
Unfortunately. I think there are still a lot of misconceptions about what might constitute a valid medical resource. So we do a lot of work to dispel what’s qualified and what’s not. We teach people how to evaluate a resource. It’s the old saying, “teach someone to fish,” right? Teach them how to evaluate those resources for them selves and really be able to make judgements and decisions based on the quality information from people who are working in the field.
Janet Kennedy: (19:59)
Yep. I think that health literacy and critical thinking skills are going to be more and more important as we go forward. It’s such a challenge now that the internet is such a giant ball of string; trying to figure out where the end is and what’s relevant, what’s accurate, what is going to help you? That is such a challenge for everyone. So it’s bad enough that you have this complicated diagnosis you don’t understand. You also then have to have the mindset to read everything with a grain of salt and make sure you’re getting valid, accurate information.
Eden Lord: (20:35)
Janet Kennedy: (20:36)
Well, let’s ask folks how they can reach out to engage with you. What’s the best way to find you on the interwebs?
Eden Lord: (20:44)
We are across social media. Obviously I think everyone is now, but the best way, depending on what your needs are, is just to reach out to us through thedashalliance.com. That’s kind of our main hub and portal that leads to everything else.
Janet Kennedy: (20:59)
Excellent. Well, to officially kick off on Rare Disease Day, a focus on conversations with rare disease, patients, advocates, and those working to improve the state of health and medicine for rare disease patients, I couldn’t have thought of a better person to have on the podcast. Eden, I find you so inspirational and the work you’re doing is hard, hard work, and I am really, really proud of what you’re doing and, in a very small way, proud to help elevate your message. So thank you very much for being on the podcast.
Eden Lord: (21:37)
Thank you so much. And you know, thanks for making me tear up because, you know, you saying you’re proud of me – that goes a long way, kid. Thank you so much, cause I value what you add to the conversation. And you know, if you recall, you came in on that one panel and saved all of our backsides and really guided the discussion on media and rare disease in a very eloquent way. And I’m still very grateful for that.
Janet Kennedy: (22:02)
Well, it’s a pleasure working with you and I consider it an honor to continue to do so in the future.
Eden Lord: (22:08)
I will see you very soon.